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Bummed
 |
Apr 27, 2011 - 8:52 pm
Hi all, Well, it seems that my onc and my gastro doc are both thinking that the lymphoma is not only in my stomach but also in my small intestine. Have had diarrhea since the first week of December - losing weight. Having a capsule endoscopy Monday. Hopefully that will confirm or deny this. My onc mentioned Treanda as a possibility for treatment. Question: Who out there has had Treanda alone? Side effects? How long did it take to work? Did you have to go for all 8 treatments? Anything you can tell me about it would help. Did anyone have it with anything other than Rituxan? Here's the thing. I am so sad that this is happening so quickly. Finished Rituxan only treatment in September and here we go again.Can't have Rituxan with the Treanda, I'm allergic to the Rituxan, had a bad reaction(went to ER) on the last day of treatment. My remission wasn't real. The biggest bummer of this is that my daughter is getting married Oct 9 and I worried about how I'm going to feel. The good news is Treanda doesn't seem to cause hair loss! Yay!! The bad news is seems that it can really cause severe fatigue which gets worse with each treatment. (For some) I am not trying to be negative- just concerned. I don't want this to effect my daughter's day in any way. I would also prefer for it to not effect our planning, which we are in good shape with. Of course I also always wanted to be able to fly - so I guess I better face some reality!! Lol Thank you for listening. Love you guys, don't know what I would do without you. Love, |
Joined: Jul 2009
Oh Donna,
I am so very sorry that you didn't have a more positive outcome from your visit with your Onc and Gastro doctors. You have been suffering, and I do mean suffering, with diarrhea for way too long. Your concerns are very real and you would have to be totally out to lunch not to be having them. No way are you being negative. Your recurrance is totally not fair any way you look at it.
My recurrence after Rituxan only treatment was anywhere from 7 to 11 months after I was told I was in remission with a negative PET. Remission 4/2008, clean PETS 4/08, 7/08, clean CT 12/08. Than experienced problems in 3/09 with positive scans in 6/09. As my cancer was aggressive I was treated with RCHOP. I do know the feel of knowing you have a recurrence. I have no experience with Treanda. But at every NHL conference I have attended I have heared that the medical community is very excited about this treatment. I hope someone who has had it will respond to you soon.
Try and get some rest tonight. Thinking of you with love and blessings,
Leslie
Joined: Jul 2010
Dear Donna,
I just took a deep breath and sighed after reading your post. I am so very sorry all of this is happening to you. You still have a little over 5 months before the wedding. I'm going to think good thoughts that if you do have to start treatments, the worst will be behind you by then. Until you know more, I'll be keeping you in my prayers. Yes...the timing really sucks, darn it. Much love...Sue (FNHL-2-3a-6/10)
Joined: Aug 2010
Hi Donna,
I am so very sorry to hear the latest news. Thats a lot to deal with. It does sound like your doc is on the ball and that you have a plan forming. Gosh, I wish it were easier for you right now. So many are going through a real rough time.
I know that Fran is doing the treanda right now, she would be a good one to ask more detailed questions.
I'll pray that things go easy for you and that by the time your daughter is ready to wed, you'll be feeling fine.
(((hugs)))
Lisha
Joined: Nov 2006
Donna so mad and sorry to hear this, try not to get ahead of this until all your test's are complete. Praying for the best...... Vinny